Carol Tobias

Cross-Disability Experiences of Barriers to Health-Care Access

In this article, we present the results of a series of focus groups with people with disabilities, in which we took a cross-disability, lifespan perspective of disability. Consumers were asked about a broad set of barriers, such as problems with communication, transportation, and insurance, as well as about barriers related to physical accessibility. We used the Institute of Medicines framework to categorize barriers as either structural, financial, or personal/cultural. Our results suggest that individuals with disabilities experience multiple barriers to obtaining health care and that these barriers are more pronounced for some types of health care than others. In addition, regardless of disability type, consumers consistently spoke about similar barriers. The results underscore the importance of taking a broad perspective when making policy decisions and the need for continued change and improvement in this area.

Health services utilization for people with HIV infection : Comparison of a population targeted for outreach with the U.S. population in care

Background:Many persons with HIV infection do not receive consistent ambulatory medical care and are excluded from studies of patients in medical care. However, these hard-to-reach groups are important to study because they may be in greatest need of services. Objective:This study compared the sociodemographic, clinical, and health care utilization characteristics of a multisite sample of HIV-positive persons who were hard to reach with a nationally representative cohort of persons with HIV infection who were receiving care from known HIV providers in the United States and examined whether the independent correlates of low ambulatory utilization differed between the 2 samples. Methods:We compared sociodemographic, clinical, and health care utilization characteristics in 2 samples of adults with HIV infection: 1286 persons from 16 sites across the United States interviewed in 2001–2002 for the Targeted HIV Outreach and Intervention Initiative (Outreach), a study of underserved persons targeted for supportive outreach services; and 2267 persons from the HIV Costs and Services Utilization Study (HCSUS), a probability sample of persons receiving care who were interviewed in 1998. We conducted logistic regression analyses to identify differences between the 2 samples in sociodemographic and clinical associations with ambulatory medical visits. Results:Compared with the HCSUS sample, the Outreach sample had notably greater proportions of black respondents (59% vs. 32%, P = 0.0001), Hispanics (20% vs. 16%), Spanish-speakers (9% vs. 2%, P = 0.02), those with low socioeconomic status (annual income <

Medication adherence for HIV positive women caring for children: in their own words

10,000 75% vs. 45%, P = 0.0001), the unemployed, and persons with homelessness, no insurance, and heroin or cocaine use (58% vs. 47%, P = 0.05). They also were more likely to have fewer than 2 ambulatory visits (26% vs. 16%, P = 0.0001), more likely to have emergency room visits or hospitalizations in the prior 6 months, and less likely to be on antiretroviral treatment (82% vs. 58%, P = 0.0001). Nearly all these differences persisted after stratifying for level of ambulatory utilization (fewer than 2 vs. 2 or more in the last 6 months). In multivariate analysis, several variables showed significantly different associations in the 2 samples (interacted) with low ambulatory care utilization. The variables with significant interactions (P values for interaction shown below) had very different adjusted odds ratios (and 95% confidence intervals) for low ambulatory care utilization: age greater than 50 (Outreach 0.55 [0.35–0.88], HCSUS 1.17 [0.65–2.11)], P = 0.05), Hispanic ethnicity (Outreach 0.81 [0.39–1.69], HCSUS 2.34 [1.56–3.52], P = 0.02), low income (Outreach 0.73 [0.56–0.96], HCSUS 1.35 [1.04–1.75], P = 0.002), and heavy alcohol use (Outreach 1.74 [1.23–2.45], HCSUS 1.00 [0.73–1.37], P = 0.02). Having CD4 count less than 50 was associated with elevated odds of low ambulatory medical visits in the Outreach sample (1.53 [1.00–2.36], P = 0.05). Conclusions:Compared with HCSUS, the Outreach sample had far greater proportions of traditionally vulnerable groups, and were less likely to be in care if they had low CD4 counts. Furthermore, heavy alcohol use was only associated with low ambulatory utilization in Outreach. Generalizing from in care populations may not be warranted, while addressing heavy alcohol use may be effective at improving utilization of care for hard-to-reach HIV-positive populations.

Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities

Few studies have directly focused on adherence to highly active antiretroviral medication (HAART) in HIV positive women caring for children. These women may have unique barriers and facilitators to taking medication, and a deeper understanding of their adherence patterns could enhance intervention strategies. A total of 36 HIV positive women who care for children less than 18 years of age were interviewed regarding their patterns and decision around taking HAART. The study group was comprised of 19 Latinas, 10 Euro-Americans, 5 African Americans and 2 Cape Verdeans. The mean length of time the women knew they were HIV positive was 11.15 years. Adherence patterns shifted over the course of the womens HIV history. The participants continually discussed medication adherence within the context of events and relationships that either upset or stabilized their adherence. The following themes emerged: (1) shifting adherence patterns; (2) reasons for adherence; (3) reasons for non-adherence; (4) the relationship between distress level and medication adherence; (5) interpersonal relationship as barrier or facilitator of medication adherence; and (6) children as facilitators in adherence. Providers need to be aware of the shifting nature of adherence and its relationship to psychosocial functioning.

Building Blocks for Peer Success: Lessons Learned from a Train-the-Trainer Program

The purpose of this article is to provide preliminary data about the results of a comprehensive survey of providers regarding their perceptions of access to health care for people with a broad range of disabilities. We conducted a mail and telephone follow-up survey of providers that contract with two managed care organizations, the Massachusetts Division of Medical Assistance, and the Assisted Living Association (36% response rate). Data were analyzed using standard methods. Results suggest that providers are more likely to provide services to patients with chronic illness, mobility, cognitive, or psychiatric impairments than they are to serve individuals with communication limitations or visual impairments. Providers also reported that people with communication impairments are the most difficult to serve. However, respondent perceptions also suggest that individuals with disabilities do not have easy access to health-care providers, despite changes brought on by the Americans with Disabilities Act.

Increasing Access to Oral Health Care for People Living with HIV/AIDS in the U.S.: Baseline Evaluation Results of the Innovations in Oral Health Care Initiative

The National HIV/AIDS Strategy (NHAS) calls for a reduction in health disparities, a reduction in new HIV infections, and improved retention in HIV care and treatment. It acknowledges that HIV-positive peers can play an important role in supporting these aims. However, peer training must be comprehensive enough to equip peers with the knowledge and skills needed for this work. This article describes the development of a national train the trainer (TTT) model for HIV peer educators, and the results of its implementation and replication. A mixed methods evaluation identified who was trained locally as a result of TTT implementation, what aspects of the TTT were most useful to trainers in implementing local training sessions, and areas for improvement. Over the course of 1 year, 91 individuals were trained at 1 of 6 TTT sessions. These individuals then conducted 26 local training sessions for 272 peers. Factors that facilitated local replication training included the teach-back/feedback model, faculty modeling of facilitation styles, financial support for training logistics, and faculty support in designing and implementing the training. The model could be improved by providing instruction on how to incorporate peers as part of the training team. TTT programs that are easily replicable in the community will be an important asset in developing a peer workforce that can help implement the National AIDS Strategy.

Does Self-Report Data on HIV Primary Care Utilization Agree with Medical Record Data for Socially Marginalized Populations in the United States?

Objectives. We provide an overview of the Health Resources and Services Administration HIV/AIDS Bureaus Special Projects of National Significance Innovations in Oral Health Care Initiative, describe the models developed by the 15 demonstration sites and associated evaluation center, and present initial descriptive data about the characteristics of the multisite evaluation study sample. Methods. Baseline data were collected from May 2007–August 2009 for 2,469 adults living with HIV/AIDS who had been without dental care, except for emergency care, for 12 months or longer. Variables included sociodemographic characteristics, HIV status, medical care, history of dental care and oral health symptoms, oral health practices, and physical and mental health quality of life. Descriptive statistics of baseline variables were calculated. Results. The study sample included 2,469 adults who had been HIV-positive for a decade; most were engaged in HIV care. The majority (52.4%) of patients had not seen a dentist in more than two years; 48.2% reported an unmet oral health-care need since testing positive for HIV, and 63.2% rated the health of their teeth and gums as “fair” or “poor.” Conclusions. This study is the largest to examine oral health care among people living with HIV/AIDS in more than a decade. The need for access to oral health care among members of this HIV-positive patient sample is greater than in the general population, following previous trends. Findings from our study reinforce the necessity for continued federal and statewide advocacy and support for oral health programs targeting people living with HIV/AIDS; findings can be extended to other vulnerable populations.

The evolution of quality management in state Medicaid agencies: a national survey of states with comprehensive managed care programs.

To test whether self-report data agree with medical record data in marginalized, HIV-infected populations, we collected information about HIV primary care visits over a 6-month period from both sources. Patients were drawn from a large study of engagement and retention in care conducted between 2003 and 2005. Self-report data were collected in face-to-face interviews and medical records were extracted using a rigorous, standardized protocol with multiple quality checks. We found poor overall agreement (weighted kappa = 0.36, 95% confidence interval = 0.28, 0.43). Factors associated with disagreement included younger age (adjusted odds ratio for 20 versus 40 years = 1.25, 95% confidence interval = 0.98, 1.60), non-Hispanic black race/ethnicity (adjusted odds ratio for non-Hispanic blacks versus non-Hispanic whites = 1.48, 95% confidence interval = 1.03, 2.13), lower education (adjusted odds ratio for high school education, GED, or less versus some college or college graduate = 1.43, 95% confidence interval = 0.96, 2.13), and substance use (adjusted odds ratio for any illicit drug/heavy alcohol use in the past 6 months versus no use = 1.39, 95% confidence interval = 1.02, 1.90). These findings do not support a conclusion that unconfirmed self-report data of HIV primary care visits are a sufficient substitute for rigorously collected medical record data in studies focusing on marginalized populations. Use of other data sources (e.g., administrative data), use of other self-reported outcome measures that have better concordance with medical records/administrative data (e.g., CD4 counts), or incorporation of rigorous measures to increase reliability of self-report data may be needed. Limitations of this study include the lack of a true gold standard with which to compare self-report data.

State Health Care Financing Strategies for Children with Intellectual and Developmental Disabilities

BACKGROUND Concern has been expressed about whether managed care health plans can successfully meet the special needs of Medicaid beneficiaries. A 1996 survey indicated that state Medicaid agencies had just begun conducting quality oversight and management. Since then the federal government has released guidelines under the Quality improvement System for Managed Care (QISMC) program to assist states with quality management of managed care programs. In 1999 a follow-up telephone survey was conducted with representatives from 45 states to describe the current state of and changes in quality management activities by state Medicaid agencies for Medicaid beneficiaries enrolled in managed care. RESULTS The 45 states represented a 50% increase between 1995 and 1999. The number of states enrolling the disabled had doubled (from 15 to 30). Most states collecting data on satisfaction and childhood immunizations fed it back to health plans, although feedback of other measures of access and quality occurred less frequently and fewer states provided information to beneficiaries choosing health plans. Fewer than 25% of states reported having even one health plan demonstrate improvement in individual measures of access and quality except for prenatal care (28%) and childhood immunizations (33%). Fewer than half of the states included contractual penalties in their contracts with health plans, and very few (three or fewer per penalty) had over invoked such penalties. CONCLUSIONS State Medicaid agencies continue to adapt to their new roles as value-based purchasers of health care. Although increasing numbers of states collect data on satisfaction, access, and quality of care, few states have been able to document improved performance in the health plans they oversee.

Substance Abuse Treatment Services for People with Disabilities Does Managed Care Prompt Innovation

We provide the first descriptive summary of selected programs developed to help expand the scope of coverage, mitigate family financial hardship, and provide health and support services that children with intellectual and developmental disabilities need to maximize their functional status and quality of life. State financing initiatives were identified through interviews with family advocacy, Title V, and Medicaid organizational representatives. Results showed that states use myriad strategies to pay for care and maximize supports, including benefits counseling, consumer- and family-directed care, flexible funding, mandated benefits, Medicaid buy-in programs, and Tax Equity and Fiscal Responsibility Act of 1982 funding. Although health reform may reduce variation among states, its impact on families of children with intellectual and developmental disabilities is not yet clear. As health reform is implemented, state strategies to ameliorate financial hardship among families of children with intellectual and developmental disabilities show promise for immediate use. However, further analysis and evaluation are required to understand their impact on family and child well-being.